Hope

[Lawley3]

Hi everyone

It has been a while since I last posted on here but I wanted to give some hope and positivity to everyone.

2 and a half years ago I was diagnosed with fnd, I was bed bound had left sided stroke symptoms I lost the use in my left arm completely, I had to be cared for as even going to the toilet was such an effort. I remember not being able to talk as this left me breathless and dizzy. I couldn't tolerate being in an upright position at all and had numbness and tingling, chest pains the list was endless. I was off work for over 18 months. I couldn't tolerate noise light etc.

Now I am back at work 5 days a week at a busy school nursery

I drive my family around to school, clubs etc. I have mostly good days now. My symptoms are so much better. I can walk distances climb stairs again etc

I do still have bad days where my symptoms become severe and just remind me of how lucky I am to have got to where I am today.

I don't know if this illness completely goes away but I am proof that things do get better.

Sending everyone love and best wishes and thanking everyone for there support x

[JessicaIndo]

Great to hear positive stories. Thank you for posting X

[Dot50]

Thank you for taking time to post that! I was thinking that we dont get to hear about people who have experienced vast improvements in symptoms like you, and so no longer need to be involved in this forum. It gives us hope and evidence that this condition can be reversed. Good luck and best wishes x

[kjkla85 in reply to Dot50]

Thank you for positing. Really nice to have some hope x

[Swim-summer]

Hi yes great to hear that people can improve from this awful illness. I am on this forum for my husband who became ill in May. It has been so hard for us both. He was hospitalised for nearly three weeks and then diagnosed by the Neurologist as having Non-epileptic seizures. He was having up to 10 a day. Once he came home he continued to have many seizures and was off work for 3 months. The seizures started to reduce and he could go a few days without any and then would have some more. His seizures didn't stop him doing anything and he still goes out although supermarkets do seem to be a problem area for him. Anyway he went back to work on a phased return but working from home only. Last Wednesday he returned back to the office. What joy. I am so proud of him because he has maintained strong throughout this ordeal. His last seizure was 2 weeks ago. I do hope he continues to improve and that one day the seizures will be gone for good.

I have found this forum very helpful so thanks to everyone.

[Lawley3]

Thank you to everyone for your replies.

I am by no means cured of this condition but I have made a vast improvement. When I look back to 2 years ago collapsing daily, in and out of hospital and being doubted by many doctors that couldn't find anything physically wrong with me. I did not physically have any energy to fight them and put up with so much negatively. I remember being force fed antidepressants by a midwife and told to take them as I must be depressed that's why I was like this. I physically didn't have the energy to stand up to her. I took 2 because forced me and I collapsed on the floor violently shaking then vomiting. How I look back now and wish I could see those doctors again that put me down and made feel like a fake. My neurologist was my lifesaver who finally gave me my diagnosis and told me my symptoms were very real but I would get better. It has taken 2 years to get to this point but I now have a lot of my old life back. It hasn't gone away but has improved to a point I can function again and I am so thankful for that. I read all the posts on the site regularly and still come here for support and advice, without all the wonderful people on here I wouldn't be where I am today. Please don't lose hope, I didn't believe I would ever get better from this awful condition but things can turn around.

Sending everyone love and support for a healthier future xx

[Rambo51]

I am now currently of work on medical retirement due to Conversion disorder FND

My condition had worsened and then seems to get better then comes back however I am in treatment and my doctor has advised that a new career would benefit me towards independence.

What type of treatment had benefited you in your recovery.

[Lawley3 in reply to Rambo51]

Hi

So sorry about replying late,

Have a read of my reply below to Recovery2017 I have explained how things improved for me but it wasn't to do with treatment. I have never had any medication for this, I briefly saw a neurophysio when I was first diagnosed but not since. My turning point came when I returned to work and my old routine before all of this started. It's as if my brain suddenly clicked back into what it should be doing and the symptoms became minimal but every few days I would have a bad day.

I wish you all the best.

[Recovery2017]

Hello, that's very encouraging . Thank you for sharing. I was diagnosed with FND (sensory problems - numbness, tingling, crawling) recently. Did you find anything in particular helped? I'm a mum too so I know how difficult it is.

Best wishes

[Lawley3 in reply to Recovery2017]

Hi

Funny enough I tried replying to your post last night, I wrote this great big reply but then it wouldn't send for some reason!

I too had severe sensory symptoms which have mostly gone away now. Although I have many days where things are better they have not gone away completely. 2 days ago I had a very bad day and thought II would have to come home from work. My balance and breathing were bad and I was lightheaded then it started creeping all into my left side. When I have a bad day my sensory symptoms are bad, the tingling, numbness and pin prick burning sensations, I too get the crawling sensations. I really have not found anything that helps. I have seen a naturopath but it didn't do anything, a chiropractor did help me initially 2 years ago but haven't seen one since. I don't know why some days I have it and some days I don't. I can't really find a pattern. The turning point came when I returned to work after maternity and sick leave. I thought it would be impossible as I had been so poorly at home for 18 months and at first it was but it was like my brain suddenly slipped back into its old ways as it remembered the routine and being around all the others seemed to distract my brain from these strange symptoms. Then I started having more and more good days but only when I was at work and I would find the weekends my symptoms would be worse when I was out of routine even holiday times my symptoms were bad because it's as if my brain couldn't cope with the change of routine and different things happening. That is all I've come up with anyway!

Best wishes to you

[Recovery2017 in reply to Lawley3]

Hello and thanks for your reply. I'm fairly new to this, my symptoms having started end July. My fingers were icy cold and tingling and my GP diagnosed Raynaulds. I wasn't convinced. I walked to Waterloo from work a couple of weeks later and my feet were numb and I got tinglling in my legs, nose, back etc. My GP referred me to a rheumatologist (who couldn't help). I'm a legal secretary and so when my fingers started burning and becoming hyper sensitive I had to stop work. I told my GP I wanted to see a neurologist. I had to do that privately as waiting lists are so long and I was diagnosed with FND and told it would get better and to take a month off work. I returned to work a week ago and so far have managed as I don't get the burning but I do get dreadful prickles all over my hands when they are warm. They feel feathery, shimmery and anaesthetised. I have a lot of problems with my feet too and my whole body vibrates. Do you have that/did you get that. I understand it was 18 months until you started to get better? Symptoms have got worse over the last 4 months but at least I can work although in a lot of discomfort . None of the GPS at my surgery had heard of FND. Did you have nerve conduction studies done?

Best wishes Olivia

[Lawley3 in reply to Recovery2017]

Hi Olivia

I am so sorry it has taken me so long to reply but my week has been hectic with family/work etc. I hope you have had a good week? And not too much pain. I haven't had any nerve conduction tests done only an mri scan that was normal. Not many people have heard of fnd so I have found it is a case of educating myself. I don't talk to anyone except my mum about my symptoms as no one understands. I hate the loneliness of this condition and would love to help others fight to be heard.

Best wishes

Louise x